Matthew Davis – blog.Bioethics.gov https://bioethicsarchive.georgetown.edu/pcsbi/blog The blog of the 2009 - 2017 Presidential Commission for the Study of Bioethical Issues Mon, 09 Jan 2017 23:23:29 +0000 en-US hourly 1 Roundtable: Brainstorming Ideas on Education and Deliberation https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/roundtable-brainstorming-ideas-on-education-and-deliberation/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/roundtable-brainstorming-ideas-on-education-and-deliberation/#respond Wed, 02 Sep 2015 21:06:32 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1701 The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) closed its discussion of democratic deliberation and bioethics education with a roundtable discussion involving Bioethics Commission members and presenters.

Amy Gutmann, chair of the Bioethics Commission, kicked off the session by asking the panelists to share their thoughts on how the Bioethics Commission could strengthen bioethics education and deliberation about important bioethical issues.

The following are highlights from the discussion:

Sir Roland Jackson, the Executive Chair of Sciencewise, commented that including diverse and expert voices is critical for good deliberation. “If you’re trying to encourage a deliberative process among the people who have the power and influence that matter, you need a wider group to deliberate,” he said.

Marion Danis, from the Department of Bioethics at the National Institutes of Health, noted that the citizenry would benefit from engaging with policymakers and lawmakers on a consistent basis, as opposed to strictly during election season. She asked the Bioethics Commission to “find a way to get governmental and organizational leaders to be more respectful of the efforts people have put in, and not just listen to people when they are trying to get elected.”

Florence Evans, a participant in a deliberative polling exercise, told the Bioethics Commission that, during her participation in What’s Next, California, the purpose of the deliberation was never made completely clear. She emphasized that for deliberation to be successful, participants need to understand the purpose of the exercise, and be able to answer the question: “to what end?”

Lisa M. Lee, Executive Director of the Bioethics Commission, emphasized the importance of starting ethics education from an early age. As she noted, ethical literacy is important for all of us in many contexts, because “all of us need skills to help us resolve ethical issues whether we are a plumber, physician, scientist or a surrogate decision maker.”

Seth Mnookin, Associate Director of the MIT Graduate Program in Science Writing, commented that for patients, honest, frank discussions with health care workers are a primary tool to aid medical decision-making. He urged similar face-to-face interaction between citizens and experts, noting, “Since we’re not about to have geneticists and chemists and physicists go out en masse and engage people one-on-one, I wonder if there is some way to take advantage of the fact that there is a very good ratio of citizen interactions with people who have a lot of scientific and medical training.”

Like Dr. Lee, Sue Knight, Curriculum Author of Primary Ethics Limited in Australia also emphasized the importance of starting ethics education early, noting, “education for ethical deliberation has to involve education in the processes of ethical reasoning.”

Robert Ladenson, Emeritus Faculty Associate at the Center for the Study of Ethics in the Professions at the Illinois Institute of Technology, encouraged the Bioethics Commission to focus on how deliberation and education can complement and strengthen one another, and emphasized that “it’s going to be very important in pursuing both of these efforts not to lose sight of the other.”

Carol Ripple, Associate Director for Education Research and Engagement at the Duke University Social Science Research Institute, urged the Bioethics Commission to “encourage the idea of really identifying core competencies through education and through deliberation that you’re really looking to develop among  a particular audience and purpose.”

Raymond De Vries, Professor of Learning Health Science at the University of Michigan, noted that it is important for the Bioethics Commission to include a sociological perspective that understands the “structural, historical, social situation that explains where we are.”

John Gastil, Head and Professor of Communication Arts and Sciences and Political Science at Pennsylvania State University, asked that the Bioethics Commission prioritize a limited set of ideas and recommendations in its report and resist the urge to embrace a wide array of issues. “You are swimming in ideas,” he said. “I can’t imagine how great the temptation must be to go into all of these different places.”

That concludes the 22nd meeting of the Bioethics Commission. The Bioethics Commission is scheduled to meet again on November 17th in Washington, D.C. For details, go to www.bioethics.gov.

 

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Teaching and Evaluating Ethics Education, Fostering and Measuring Success https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/teaching-and-evaluating-ethics-education-fostering-and-measuring-success/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/teaching-and-evaluating-ethics-education-fostering-and-measuring-success/#respond Wed, 02 Sep 2015 20:55:45 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1699 At today’s meeting, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) resumed its consideration of the many facets of effective deliberation and education surrounding bioethical issues by looking at two related issues: teaching ethics and deliberative skills, and fostering and measuring the efficacy of ethics-related education curriculum and deliberative processes.

In its 2014 report Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society, the Bioethics Commission called for the integration of ethics and science through education at all levels. Today, the Bioethics Commission heard about pre-professional bioethics education with presentations from Sue Knight, Ph.D. of Primary Ethics Limited and Robert F. Ladenson, Ph.D. of the Center for the Study of Ethics in the Professions.

Knight noted that it is possible to develop ethical literacy in students at all age levels. She said that while older students are able to engage more nuanced and morally complex situations, it can be surprising how very young children are able to identify ethical conduct. “Research shows that from the age of two and a half, children can distinguish between social convictions and moral laws,” Knight said.

Landenson has been seeking a greater focus at both the college and high school levels on deliberation and ethics by promoting an Ethics Bowl. Modeled on the Quiz Bowl format, student teams are assessed in their capacity to present and understand case studies in ethical quandaries. “The teams have to be able to listen to each other with an open mind,” said Landenson. “The team members have to be able to consider seriously different views and appreciate them, not in the sense of being persuaded, but in recognizing how a morally responsible person would hold that position.”

The next panel looked more broadly at what constitutes an effective approach to ethics education and, in a related discussion, what constitutes an effective deliberative process.

Carol Ripple, Ph.D., with Duke University’s Social Science Research Institute, said it can be a challenge to get educators involved in teaching ethics to step back and think about their impact because they are focused on developing their curriculum and “evaluation and measurement may be a distant thought.”

In a similar vein, Raymond De Vries, Ph.D, said there is also a growing interest today not just in convening deliberative bodies, but also in looking more closely at the nuts and bolts of a successful and meaningful deliberative process. He noted, among other things, that there are numerous pitfalls to be avoided in putting together a deliberative process to engage complicated bioethical issues. For example, he stressed, “I am worried about expert opinion overwhelming public opinion.”

John Gastil, Ph.D, said that one thing he has encountered in working with a wide variety of deliberative bodies is that size can matter—it can impact the ability of the body to carry out a functional set of discussions. For example, if the group is too large, he said, factions and coalitions can form that can cause a breakdown in the overall process. His magic number is 24.

“The reason that is a good number is that a 12 person jury gets a lot done but two dozen is what you need for more complex issues that we usually give people,” explained Gastil. “But it’s not so big that they can’t meet as a coherent entity and the group dynamics can be positive.”

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Fluency in Science and Ethics https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/fluency-in-science-and-ethics/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/fluency-in-science-and-ethics/#respond Wed, 02 Sep 2015 17:46:38 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1696 Continuing its discussion of the role of deliberation and education in bioethics, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned to a broad consideration of how to improve fluency in science and ethics.

Lisa M. Lee, Executive Director of the Bioethics Commission, discussed the current state of bioethics education, particularly the growth over the last decade of Master’s degree programs in bioethics, and the role of bioethics education as a complement to existing training in other disciplines or professions.
Lee said that as bioethics programs proliferate around the country, the challenge is to make sure students are well trained, and the programs do more to create competency and fluency than just “teach topics.”

Seth Mnookin, associate director of the MIT Graduate Program in Science Writing, raised a difference set of concerns regarding the state of knowledge of important and frequently controversial issues in bioethics, particularly with regard to the desire for more deliberative discussions.

Mnookin said one challenge of public engagement via deliberation involves deciding who should be included in the process. He noted that his research caused him to question the approach of bringing all opinions, even the most extreme, into a public dialogue. The desire to be inclusive, he noted, can have the effect of lending legitimacy to those who insist upon beliefs that directly contradict with objective facts.

“We should not pretend they are not there,” he said, of people with polarizing or extreme views, adding that it is important to ensure that those who are invited to join the discussion are willing to consider other points of view and acknowledge objective scientific evidence. Mnookin said the tension involves a need to create a thoughtful discussion around important scientific concerns versus “going out of your way to include people who are not willing to deliberate” because they are not likely to respectfully consider other points of view.

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Public Bioethics https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/public-bioethics/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/public-bioethics/#respond Wed, 02 Sep 2015 16:16:39 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1691 In today’s opening session, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) turned its attention to facilitating public dialogue about bioethics. Democratic deliberation is a guiding principle of the Bioethics Commission. As outlined in its first report, New Directions: The Ethics of Synthetic Biology and Emerging Technologies, the Bioethics Commission believes that public discussion and debate promote outcomes that are inclusive, thoughtfully considered, and respectful of competing views. Learn more about the Bioethics Commission’s deliberative process in the video: “How does the Bioethics Commission work?

The Bioethics Commission heard from Dennis Thompson, Ph.D. of Harvard University; Sir Roland Jackson of ScienceWise; Marion Danis, M.D. of the National Institutes of Health Clinical Center, and Florence Evans, a participant in the “What’s Next California” deliberative polling exercise.

In Democracy and Disagreement, Thompson has argued that democratic deliberation can allow diverse groups separated by class, race, religion, and gender to explore an issue together in ways that allow their different views to stimulate a richer and more extensive discussion.

In this morning’s session, he pointed to the power of deliberative discussions to reach beyond the particular group or body involved, as people who participate become more interested in keeping the dialogue going in their everyday life.

“Deliberations can be propagated,” he said. “There is a study that found that citizens who participated in deliberative action are more likely to talk about the issues and engage with co-workers in ways they didn’t before, and this was an equal opportunity [engagement]. There was not a bias in favor of class and education.”

Jackson, whose organization, ScienceWise, is focused on fostering broader discussions of significant science and technology concerns in the UK, said it’s important to understand that consensus is not necessarily the goal of deliberative processes.

“These are not citizens’ juries or consensus conferences,” he said. “The richness of what comes back from deliberative dialogue is plural and conditional responses. It is then up to the decision maker, the policy maker, to draw on that to make their own conclusions.”

Danis described a specific approach to creating a deliberative process around health insurance policy decisions that uses a game board to facilitate discussions about the complicated array of trade-offs involved. She noted that the experience has demonstrated that “a structured public discussion regarding complex and contested priorities is possible, and the process can improve public understanding and foster meaningful dialogue.”

One challenge she has encountered involves moving the process to the next step—in which the information yielded from deliberative discussions influences policy decisions.

Evans shared her experience as a participant in “What’s Next California,” an innovative effort to draw more ordinary citizens into in-depth consideration and debate of pressing and controversial political issues facing Californians. Evans was impressed with how the deliberative approach prompted a more civil and respectful dialogue on such partisan topics.

“It was an amazing experience,” she said. “We were a bunch of strangers from a lot of different backgrounds…. But everyone was very respectful of each other… There were times when there were emotional responses that were highly charged but they did not dominate.”

After a short break, we will hear from two speakers who will explore fluency in science and ethics.

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Live from Washington https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/live-from-washington-4/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/09/02/live-from-washington-4/#respond Wed, 02 Sep 2015 13:17:59 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1689 Welcome to Washington DC for the 22nd public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission).

At today’s meeting, the Bioethics Commission will continue its discussion about the role of deliberation and education in bioethics. Check out the full agenda here.

Bioethics Commission Chair Dr. Amy Gutmann opened up the meeting by framing the discussion with illustrative examples of deliberation and its impact in action. She referenced the deliberative process of the Bioethics Commission and the real-world implementation of several of the Commission’s recommendations.

You can follow the proceedings of the Bioethics Commission’s meeting here at this blog, and on the live webcast at the Bioethics Commission’s website. All transcripts and webcasts will be archived and available following the meeting.

The Bioethics Commission is meeting today, September 2, 2015, from 9 a.m. to 4 p.m., ET.

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Rethinking the Global Response to Public Health Emergencies https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/06/rethinking-global-response-public-health-emergencies/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/06/rethinking-global-response-public-health-emergencies/#respond Fri, 06 Feb 2015 17:26:39 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1534 Members of the Presidential Commission on the Study of Bioethical Issues (Bioethics Commission) are considering possible recommendations for future engagements in public health emergencies, including ethical approaches to conducting research in affected countries even in the midst of a crisis.

Yesterday’s deliberations touched on a wide range of issues generated by the ongoing Ebola epidemic in western Africa, from the ethics of using placebos in clinical trials, to the stigmatization of members of western African communities and health care workers who tended to the sick, to the need to improve the response to future outbreaks.

Commission members heard from a wide variety of speakers, including current and former government officials; leading experts in infectious disease, ethics, and global health; and people who belong to and work with communities both in western Africa and the U.S. who have been profoundly affected by the epidemic.

The day closed with a roundtable discussion at which Amy Gutmann, Ph.D., Chair of the Bioethics Commission, posed a simple question: “If there was one thing you think could be improved moving forward in the U.S. response to public health crises like Ebola, what would it be?”

The following are highlights from the panel’s recommendations:

“Throughout this whole outbreak…I always thought: wouldn’t it be nice to have an empowered and independent Surgeon General who could have spoken to the public in a clear, concise way. Somebody who was not micromanaged by the White House or other agencies could have been a game-changer.”
— Peter Hotez, M.D., Ph.D., Dean of the National School of Tropical Medicine at Baylor College of Medicine and President of the Sabin Vaccine Institute

“At the end of the day you can have the best public health system, but you have to build it on the backs of an educated community…As part of the (Ebola) crisis we are facing now, there are about five million kids across three countries who are in danger of missing a whole year of school and that has not been factored into most of the response we have seen. I think that the important intersection between education and health is part of a long-term sustainable solution (to public health challenges).”
— Chernor Bah, Chair of the Youth Advocacy Group at the Global Education First Initiative, and a former child refugee from Sierra Leone who has worked in all three countries affected by the recent Ebola epidemic

“Everyone needs a civics lesson about what states’ rights allow and what the federal government can do. The CDC was lambasted in the early days of the (Ebola case in Dallas) because they did not come in and save the day, without knowing that (legally) they would need to be invited (by Texas authorities) to do so.”
— Howard Markel, M.D., Ph.D., the George E. Wantz Distinguished Professor of the History of Medicine at the University of Michigan

“We need to stress in all messaging to the public the vital importance of structural factors, including inequities in health care in the U.S. and globally, to the spread and prevention of disease. I think that not only will improve people’s health, but it also is the best way to challenge stereotypes and myths about disease.”
— Dorothy E. Roberts, J.D., the George A. Weiss University Professor of Law & Sociology at the University of Pennsylvania

“We need to be better incorporate communications strategies and health literacy into public health strategies. During epidemics, we need to take that as seriously as we do surveillance and make it a key part of the public health response.”
— Seema Yasmin, M.D., a Professor of Public Health at the University of Texas at Dallas, and Staff Writer, Dallas Morning News

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Bioethics Commission Finalizing Work on Neuroscience https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/06/bioethics-commission-finalizing-work-on-neuroscience/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/06/bioethics-commission-finalizing-work-on-neuroscience/#respond Fri, 06 Feb 2015 15:15:51 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1539 On July 1, 2013, President Obama requested that the Presidential Commission for the Study of Bioethical Issues (the Bioethics Commission) review the ethical considerations of neuroscience research and its application as part of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

Specifically, the President instructed the Bioethics Commission to “identify proactively a set of core ethical standards – both to guide neuroscience research and to address some of the ethical dilemmas that may be raised by the application of neuroscience research findings.”

Today, during its public meeting in Washington, D.C., the Bioethics Commission worked to wrap up its work on neuroscience and related ethical issues and to finalize its recommendations to the President.

The Bioethics Commission has held (counting today’s gathering) nine public meetings in five cities — Washington, D.C., Salt Lake City, Atlanta, Philadelphia, and San Francisco — that have focused on neuroscience. They have featured extensive discussions with experts from a wide array of disciplines, including neuroimaging, cognitive neuroscience, neurology, computational neurobiology, nanotechnology, psychiatry, ethics, philosophy, computer science, behavioral health, engineering and law. The Commission also has heard detailed public comments from affected communities, including advocates for patients with Alzheimer’s disease, Parkinson’s disease, depression and bipolar disorders.

The Bioethics Commission provided its initial recommendations to President Obama last year in volume one of its Gray Matters report, in which it stressed the importance of integrating ethics early and throughout neuroscience research.

Today’s deliberations will inform the Bioethics Commission’s recommendations for Gray Matters, Volume two, which will focus on three areas: cognitive enhancement and other neural modifications, capacity and the consent process, and neuroscience in the legal system.

Bioethics Commission Chair Amy Gutmann noted that these three areas “illustrate the ethical tensions and societal implications that can arise as neuroscience and technology advance.”

“Our Commission is well situated to clear a path for productive discourse and conduct policy making on these topics,” she added.

The Commission expects Gray Matters, Vol. 2 to be released this spring.

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Back Live for Day 2 of the Bioethics Commission Meeting in D.C. https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/06/back-live-for-day-2-of-the-bioethics-commission-meeting-in-d-c/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/06/back-live-for-day-2-of-the-bioethics-commission-meeting-in-d-c/#respond Fri, 06 Feb 2015 14:07:52 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1536 We are back live and blogging in Washington, D.C. for day 2 of the 20th public meeting of the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission).

The Bioethics Commission is continuing the discussion initiated at its November meeting in Salt Lake City focusing on issues arising at home and abroad from U.S. engagement in the global response to the current Ebola epidemic. Members today also resume consideration of ethical issues associated with neuroscience research and the application of neuroscience findings, as requested by President Obama.
You can follow the proceedings of the Bioethics Commission’s meeting here at this blog, and on the live webcast. The webcast and transcripts from the meeting will be archived and available following the meeting at www.bioethics.gov.

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Amnesia and Other Side Effects of Epidemics https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/05/amnesia-other-side-effects-epidemics/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/05/amnesia-other-side-effects-epidemics/#respond Thu, 05 Feb 2015 23:00:17 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1532 If there is one medical condition that commonly occurs at the culmination of many infectious disease epidemics it is “amnesia.”

That was the message from Howard Markel, M.D., Ph.D., the George E. Wantz Distinguished Professor of the History of Medicine at the University of Michigan. He looked to previous fights against infectious diseases over the last 200 years to help the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) process the many lessons to be learned from the recent Ebola epidemic.

Markel said his fear is that precious little will be learned, or that what has been learned will quickly be forgotten.

“The most common final end to a pandemic is what I call profound amnesia,” he said. “SARS? What’s that? We are not yet at ‘Ebola? What’s that?’ But I guarantee you we will be there. And that’s the real problem.”

The Commission is grappling with the U.S. engagement in the global response to the current Ebola epidemic, and Thursday afternoon it sought insights from historical, sociological, and legal perspectives.

For the recent history of the fight against Ebola, the panel turned to Unni Karunakara, Dr.PH, a Senior Fellow at Yale University’s Jackson Institute for Global Affairs. Karunakara was involved in some of the early fights against Ebola during his time with Médecins Sans Frontières (Doctors Without Borders or MSF), where he last served as International President.

Karunakara said the confusion and suspicion that accompanied his early experiences confronting Ebola outbreaks in Africa quickly taught him that there is one thing that will always undermine the effectiveness of the effort.

“Ebola allows no time for mistrust,” he said. “Speed is of absolute importance in an outbreak response.”

Karunakara said MSF has learned that lesson well — for example, it now makes sure Ebola patients under its care can directly be observed from a safe distance by their relatives. That way, he explained, there is quite literally, transparency. But he said mistrust quickly became endemic in the recent Ebola outbreak when early on in the response authorities contemplated quarantines and enacted various restrictions on movement.

“We know that coercive policies are remarkably counter-productive,” Karunakara said. “Checkpoints and roadblocks meant to limit and control movement became a disincentive to seeking care. Fear of being quarantined has made people less forthright about having been in West Africa.”

Dorothy E. Roberts, J.D., the George A. Weiss University Professor of Law & Sociology University of Pennsylvania, believes some of the mistrust and suspicion surrounding the U.S. reaction to the Ebola epidemic stems from the fact that the disease tends to be viewed through the lens of racial stereotypes.

“The two things Americans associated with Ebola the most was Africa and fear,” she said. “The extent to which fear outweighed the scientific evidence of risk was determined by racial concepts and stereotypes and assumptions.”

Roberts said the racial view of disease has led many to think of Ebola as a disease of black people.

“There is a long history in the United States of understanding disease in racial terms and racial differences in terms of disease,” she said.

James W. Wagner, Ph.D., the Commission’s Vice Chair, wryly noted that the panel’s observations painted a bleak picture.

“What we have been hearing from you three is that the life cycle of an epidemic is to begin with denial and neglect and to end with amnesia,” he said. “And the middle is marked with disparities and human rights restrictions and misinformation.”

The Bioethics Commission is expected to deliberate possible recommendations tomorrow morning on the second day of its public meeting.

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Experiencing Ebola: First-Person Perspectives from the Diaspora and Health Care Workers https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/05/ebola-perspectives-from-the-diaspora-healthcare-workers/ https://bioethicsarchive.georgetown.edu/pcsbi/blog/2015/02/05/ebola-perspectives-from-the-diaspora-healthcare-workers/#respond Thu, 05 Feb 2015 20:49:43 +0000 https://bioethicsarchive.georgetown.edu/pcsbi/blog/?p=1530 Among the many unfortunate outcomes of the recent Ebola outbreak is how public reaction played out in the affected communities, both in the countries themselves and also in the western African diaspora in the U.S.

As the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) continued its review of U.S. engagement in the global response to the current Ebola epidemic, it considered the experience of people who were quickly swept up in the tumult.

Oretha Bestman-Yates, who immigrated to the United States from Liberia in 1987 and now serves as president of the Staten Island (New York) Liberian Community Association, said Liberians in this country — even those who had been here for years — suddenly found themselves subject to suspicion and discrimination.

“I was directly hit by the stigmatization,” she said. “I even lost my job because I visited Liberia in July and my son, who was proud to call himself Liberian-American, now does not want to be associated with anything from Liberia. We were targeted by our neighbors…As you boarded a train or ferry people actually stood away from you because of your accent.”

Chernor Bah, Youth Engagement Officer of A World at School and Chair of the Youth Advocacy Group at the Global Education First Initiative, discussed the epidemic from the perspective of communities in western Africa. Bah is a former child refugee from Sierra Leone and has connections through non-profits to all three countries affected by the epidemic.

He said there were unfortunate aspects of the international response that fed fears and paranoia in the affected countries that the Ebola infections were caused by some type of conspiracy. Bah said one response that was particularly jarring was the decision by certain countries to ban any flights from Sierra Leone and Liberia.

“That created a sense of isolation and also a sense of helplessness,” he said. “It allowed conspiracy theories to fester and it took so much time for the counter narratives to take root.”

A similar sense of isolation and stigmatization also affected U.S. health care workers who have worked the Ebola wards of western Africa. Patricia Henwood, Director of Global Health Initiatives in the Department of Emergency Medicine at the Hospital of the University of Pennsylvania, has served on two Ebola-related medical missions to Liberia. She spoke to the Commission the day after her 21 day isolation period from her most recent mission.

Henwood noted the surreal experience of working in the intense environs of Ebola treatment centers, “quietly crying in our facemasks and goggles while holding the hand of children as they draw their last breath,” and then returning to a growing wave of suspicion, inconsistent policies and calls for quarantines.

“At times it felt more of a challenge to manage the return to the U.S. than to do the Ebola work in West Africa,” she said. “We were touted as heroes when we worked in West Africa, but treated as pariahs when we returned home.”

The stories from the front-lines of the epidemic clearly moved members of the Commission. Christine Grady, R.N., Ph.D., Chief of the Department of Bioethics at the National Institutes of Health Clinical Center, teared up as she thanked the panel. “I just want to say I think you are all heroes and I wanted to shout out to the nurses because I am a nurse.”

Commission Chair Amy Gutmann said she has been impressed by how returning health care workers have been so “rationally passionate and passionately rational.”

As the fears in the United States appear to be dying down, Bah said he now finds it jarring how a disease that had so consumed American media and politicians just a few months ago is now largely ignored in the U.S., even as cases continue in Sierra Leone.

“Yesterday we had 21 cases in Sierra Leone,” he said. “We still have schools that have been closed down for a year. People are still dying every day, but we are speaking about Ebola as if it is in the past tense.”

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